Much trauma is caused by unfair uses of power in groups, particularly by moderators of online communities, who often act with unfair bias. This is a place to make such cases known to try to deter them from happening.

Project Censored is considered the “alternative Pulitzer Prize” by some journalists. This Saturday, 22 Oct., Project Censored awarded the “Top 25 Censored Stories of 2006” — important news that mainstream media covers up.

Number 11 in the Top 25 is journalist Jeanne Lenzer whose series of articles in the _British Medical Journal_ showed how President Bush is calling for “mental health screening” for children and adults in the USA in a plan that could result in hundreds of thousands of more citizens being placed on psychiatric drugs without adequate protection of human rights.

Even though President Bush calls for making this psychiatric screening “common practice” throughout the USA the corporate mainstream media has largely refused to inform their readers.

BELOW is the forwarded announcement from Project Censored including an UPDATE from Jeanne Lenzer:

In April of 2002, President Bush appointed a 22 member commission called the President’s New Freedom Commission on Mental Health in order to “identify policies that could be implemented by Federal, State and local governments to maximize the utility of existing resources, improve coordination of treatments and services, and promote successful community integration for adults with a serious mental illness and children with a serious emotional disturbance.”1 Members of this commission include physicians in the mental health field and at least one (Robert N. Postlethwait) former employee of pharmaceutical giant Ely Lilly and Co.

In July of 2003 the commission published the results of their study. They found that mental health disorders often go undiagnosed and recommended to the President that there should be more comprehensive screening for mental illnesses for people of all ages, including pre-school age children. In accordance with their findings, the commission recommended that schools were in a “key position” to screen the 52 million students and 6 million adult employees of our nation’s schools.2

The commission also recommended linking the screenings with treatment and support. They recommended using the Texas Medication Algorithm Project (TMAP) as a model treatment system.3

TMAP, which was implemented in Texas’ publicly funded mental health care system while George W. Bush was governor of Texas,4

is a disease management program that aids physicians in prescribing drugs to patients based on clinical history, background, symptoms, and previous results. It was the first program in the United States aimed at establishing medication guidelines for treating mental health illnesses.5

Basically, it is an algorithm that recommends specific drugs which should be used to treat specific diseases. Funding for TMAP was provided by a Robert Wood-Johnson Grant as well as several major drug companies. The project began in 1995 as an alliance of individuals from pharmaceutical companies, the University of Texas, and the mental health and corrections systems of Texas.6

Critics of mental health screening and TMAP claim that it is a payoff to Pharmaceutical companies. Many cite Allen Jones, a former employee of the Pennsylvania Office of the Inspector General. He was fired when he revealed that many key officials who have influence over the medication plan in his state received monetary perks and benefits from pharmaceutical companies, which benefited from their drugs being in the medication algorithm. TMAP also promotes the use of newer, more expensive anti-psychotic drugs. Results of studies conducted in the United States and Great Britain found that using the older, more established anti-psychotic drugs as afront line treatment rather than the newer experimental drugs makes more sense. Under TMAP, the Ely Lilly drug olanzapine, a new atypical antipsychotic drug, is used as a first line treatment rather than a more typical anti-psychotic medication. Perhaps it is because Ely Lilly has several ties to the Bush family, where George Bush Sr. was a member of the board of directors. George W. Bush also appointed Ely Lilly C.E.O. Sidney Taurel to a seat on the Homeland Security Council. Of Ely Lilly’s $1.6 million political contributions in 2000, 82 percent went to Republicans and George W. Bush.7

In November of 2004, Congress appropriated $20 million8 to implement the findings of the New Freedom Commission on Mental Health. This would include mandatory screening by schools for mental health illnesses. Congressman Ron Paul, R-Texas introduced an amendment to the appropriations bills which would withhold funding for mandatory mental health screenings and require parental consent and notification. His amendment, however, was voted down by a wide margin (95-315 in the House of Representatives).9 Paul, a doctor and long-time member of the American Association of Physicians and Surgeons (AAPS) states, “At issue is the fundamental right of parents to decide what medical treatment is appropriate for their children. The notion of federal bureaucrats ordering potentially millions of youngsters to take psychotropic drugs like Ritalin strikes an emotional chord with American parents.” Paul says the allegation “that we have a nation of children with undiagnosed mental disorders crying out for treatment is patently false,” and warns that mental health screening could be used to label children whose attitudes, religious beliefs, and political views conflict with established doctrine. Paul further warns that an obvious major beneficiary of this legislation is the pharmaceutical industry. The AAPS has decried this legislation, which they say will lead to mandatory psychological testing of every child in America without parental consent, and “heap even more coercive pressure on parents to medicate children with potentially dangerous side effects.”

Update by Jeanne Lenzer:

Whether it’s the pills we take or the oil we use, it would be reassuring to know that the information used to develop new medicines or to utilize natural resources wisely is based on science–not corporate spin.

But blandishments from Big Pharma to politicians and doctors have a profound effect on health care in the U.S., making medical research closer to propaganda than science at times.

One way drug companies, in collusion with doctors, increase their market share is to expand the definition of diseases. When diagnostic criteria were liberalized for attention deficit disorder in 1991, the number of children diagnosed jumped by about 60 percent.

The American Psychiatric Association (APA) acknowledged in the July 2004 issue of Advocacy News that, “The BMJ story has gained some traction in derivative reports on the Internet.” But, they boasted, “mainstream media have not touched the story, in part thanks to APA’s work, for which the [Bush] Administration is appreciative.”10

The APA’s boast is curious. The article was the most downloaded article in the history of the BMJ. It clearly struck a nerve with a public wary of doctors and politicians whose pockets are lined with drug company money.

Given the interest in the BMJ story, it would seem that the APA, instead of attempting to keep the story out of the mainstream media, would be anxious to counter the widely circulated statements in the article. It would also seem that the mainstream press could provide the Administration and the APA the best possible vehicle to counter these supposed factual errors in the BMJ article.

But, the facts might prove difficult to square with the public. More than one in every 100 toddlers and preschoolers in the United States are on powerful psychiatric drugs, such as Ritalin and Prozac, according to a study published in the February 2000 issue of the Journal of the American Medical Association.

Joseph T. Coyle, M.D., wrote in an accompanying editorial, “It appears that behaviorally disturbed children are now increasingly subjected to quick and inexpensive pharmacologic fixes, as opposed to informed mutimodal therapy.” He concluded, “These disturbing prescription practices suggest a growing crisis in mental health services to children and demand more thorough investigation.”

But instead of issuing warnings about overmedication or inappropriate prescribing, the experts on the New Freedom Commission warn ominously that too few children are receiving treatment for mental illness. They cite escalating numbers of toddlers expelled from daycare as evidence of potentially serious psychological problems–problems to be diagnosed and cured with mental health screening and pills. Social and economic reasons for the rise in kiddie expulsions are left unexamined.

As bad as this is for those put on drugs and labeled “mentally ill,” the far bigger concern is the creation of a disease for every drug, a situation made possible by the hand-in-glove relationship between industry and the government.

President Bush and his New Freedom Commission on Mental Health recommend screening all Americans for mental health problems starting with youth through their schools. This screening has already started in a number of schools.

We call for the immediate halt to these screening programs. Instead, we call for the implementation of far better alternatives for mental and emotional care.

Until a broken and dangerous mental health system is fixed, mental health screening just adds fuel to the fire.

Screening programs threaten to place hundreds of thousands of American youth on a conveyor belt type approach toward psychiatric labeling and drugging. Current mental health screening programs have specific steps. A screened individual is evaluated for a diagnosis. A diagnosed individual is frequently prescribed psychiatric drugs. For some the end result has even been forced drugging over the objections of the subject and their family (source: Mother Jones 5/05).

The vast majority of Americans want to ensure that troubled kids and adults receive humane and safe help. However, there is ample evidence that the mental health system in the United States is now causing a great deal of harm.

For example, the mental health system is based on a diagnostic labeling system that has been shown to be unscientific.

Also, the Food and Drug Administration has recently acknowledged that anti-depressants carry serious risks to children, adolescents, and adults. Other psychotropic drugs have also been shown to carry serious risks of harm. This is of particular concern because of the skyrocketing rates of prescription of psychotropic drugs of all kinds for children and adolescents.

Some proponents of screening argue that they are not calling for “universal” or “manadatory” screening. But whatever words are used to describe it, the fact is that massive and extensive screening programs heavily influenced by the psychiatric drug industry are entering many schools today.

When the President of the United States announces he wants mental health screening of youth to be a “common practice” that is a lot of pressure on schools, kids and families. This is exactly what President Bush did when he endorsed his New Freedom Commission’s Goal Four.

In order to provide help for people who need and want it without causing additional harm, the following safeguards need to be implemented:

(1) STOP CURRENT SCREENING PROGRAMS IMMEDIATELY

The moment one applies mental health screening methods such as “TeenScreen” and “TMAP” on the basis of flawed diagnostic systems and questionnaires, one is making the problem worse. Screening misses some people with serious emotional problems on the one hand, and, on the other hand, mistakenly classifies other people as pathological.

Questionnaires and formal diagnostic interviews often fail to catch kids who are going to kill themselves, for example.

(2) PAY MORE ATTENTION TO YOUTH IN A COMMON SENSE WAY.

A child ought to have the opportunity to voluntarily talk with caring adults about the things that are upsetting them in whatever setting they are, including schools. That non-medical, common sense approach is better because it yields real life qualitative information, not simplistic quantitative data like questionnaires.

(3) FULLY INFORM FAMILIES.

The public needs to be educated that many current mental health programs may be harmful to one’s health. The public needs to hear that psychiatric drug companies helped create and promote many of these screening programs to get more customers for the highest priced drugs.

Fully informed consent should always be required in any kind of mental health care. Full informed consent means explaining to children and their parents or guardians about the full range of approaches that can be helpful. Families need to know about the hazards of psychotropic drugs and the lack of clinical trials for young subjects. Today, primarily only two approaches are recommended almost exclusively: drugs and traditional types of psychotherapy which tend to be rigid and limited.

(4) END THE BIAS TOWARD PSYCHIATRIC DRUGS IN MENTAL HEALTH CARE.

For families who do seek mental and emotional care, there ought to be no cookie-cutter like “algorithm” or “protocol” that unfairly favors the use of psychiatric drugs above all other options. The psychiatric drug industry has unfair influence throughout the mental health system making it unsafe.

A wide range of alternatives to drugs and traditional psychotherapy must be available to all who seek them. When there are only one or two “choices” for those who are desperate, that is one of the most insidious
and subtle kinds of coercion.

(6) ADVOCACY AT ALL LEVELS.

Effective advocacy programs, including peer support when possible, ought to be widely available to help people gain access to the employment, educational and other social services they may choose.

Advocates ought to help support the empowerment of individuals and families who wish to avoid unethical professionals and mental health agencies who may exploit and harm them. Advocates must help our democracy get more “hands on” with the mental health system.

Making screening “common practice” threatens the health and human rights of thousands of Americans. Therefore we call for an immediate halt to these screening programs.

The Education Additional Support For Learning Act

(in Scotland) 2004, coming into effect Nov 2005, creates an entitlement for children passing through decisions on educational needs, to have their own views taken and consulted with. The expanded variety of needs that have come into recognition since the last act in 1980, and the harmful experiences of authoritarian education that preceded their recognition, compelled MSPs to accept this reform.

It means the children and parents, in order to express their views, are entitled for all experiential evidence on past failiures of school practice and their results, to be publicly known, or else they would suffer disability discrimination. There follows an automatic right to publish these things.

and meanwhile

“special needs education” is a label that some have always found objectionable, because it covers children of normal intelligence with social adjusting troubles and simultaneously covers learning disability. This kind of uncomfortable feeling lay behind the swing, around 1980, to seeking integration into ordinary schools, of children with behavioural or other coping problems, or curricular difficulties. the government report recommending this move was made under the chairmanship of Mary Warnock.

Now (still around in the Lords), she has said the application of this ideal has become too ideological and applied rigidly without thinking whether it fits each case. She hasn’t said the ideal was always misguided, but she has had a change of heart over it based on its results. On radio 4 “The Westminster Hour” Oct 2, she has called it cruelty to send a child with Asperger Syndrome to a large secondary school. It’s an incompatible environment to cope with.

Now that has been said, the effects of the cruelty on its past subjects has a claim to be dealt with in any way that they indicate affects their present lives. It also affects the sum of knowledge available for applying to present children. All politicians need to give their positions on how this shall be organised and the information centrally pooled for reference. the likes of Children In Scotland need to push them to.

Sent on 2 July 2001 to all 212 education authorities in the UK as listed in Whitaker’s Almanack.

Concerning a parliamentary record on all dress codes and uniforms being A human rights violation in International Law.

This record is in the submission I was invited to make to the Scottish Parliament procedures committee’s enquiry into “Consultative Steering Group principles” and equal opportunities. Committee clerk Mr John Patterson appreciated the submission on June 26. Without prejudging at all the committee’s response to it, its existence presents all operators of schools with a responsibility to absorb its implications for equal opportunities and human rights.

“This is not confined to Scotland, it follows for every democracy that subscribes to international principles against discrimination and for minorities.

In the submission, I cited the link between skin sensitivity, metabolism, and body electricity to show that comfort identities are scientifically serious and not frivolous. Comfort identities are minorities who make unusual choices of costume. It follows they are entitled to the same recognition and equal opportunity status as all other categories of minority, and this is violated by uniforms or dress codes, hence these are invalidated.

It follows this applies equally to uniformities imposed by peer groups. Hence, until all experiential evidence on these comfort identities is published, it violates human rights to enforce school attendance at all for children who identify with costumes that peer group prejudice against exists.

On 17 June 2004 an anti-social behaviour act was also passed, an equivalent act had been passed in England in 2003, creating powers for anti-social behaviour orders that autistic organisations and the CPG believe could be used against autistic behaviours in lack of understanding, hence violation of a person’s needs. For this reason too everyone on the autistic spectrum is entitled to automatic publishing of anything related to making any authorities empowered under these laws understand autistic or related behaviours and needs. The Education Additional Support For Learning Act passed on April 1 is linked to this, for by its provisions for consultation a state admission exists to not necessarily understanding our needs, from which the duty to understand them applies to the operation of these anti-social behaviour acts too.

It already appeared by 2005 that he-special-uk may be gone, as it no longer shows up in a search of Yahoo groups. Subsequent encounters with the character Fiona at politcal events in Scotland gave strong indications confirming it’s gone.

he-special-uk was a Yahoo group that worked only through email, that is advertised in the book Freaks Geeks and Asperger Syndrome as a support group for home education and school problems. That the book was never been recalled to strike out all reference to it, was an act of public medical deceit and child exploitation that reflects on every organisation that continues to have anything to do with the book.

I belonged to he-special-uk Dec 2002 to March 2003. My first contact with it was to see if its members were interested in backing or using for themselves, a political situation I had just created. The illegal failiure of all child protection authorities covering Coventry to publish by automatic right experiential evidence against the gifted children movement, gives the public a legal claim on the government, on child protection grounds, to have any personal evidence on any bad outcomes in education published by automatic right. I emailed the group moderator about this, without in fact asking to join, and found that I was encouraged to join, the message was posted to all the group members and I got a friendly response.

I had no way of knowing before joining that the membership included Jacqui Jackson. By the way, as adaptor of the Freaks and Geeks book’s content she had the dominant-sounding role in shaping it into a book, which makes it effectively co-written, though Luke has denied that Jacqui was quoted correctly in the Times of 16 Aug 2002 when she painted herself as 12/13 the author. Look it up at a decent reference library anyway, as one source to confirm the picture of co-writing.

Also a member was Isobel Brookfield, of the National Autistic Society’s national council, who had really strong anti-school views similar to mine and wanted to know more about my experiences. She wrote “I am sure the group will be sympathetic” and helped me overcome a technical problem with enabling my receipt of group emails.

This was at a time when I wasn’t yet sure I’m aspie, having not yet learned that the trait of taking all metaphorical expressions word-for-word iterally, which I don’t have, is not essential. The level of understanding in all books on AS until 2002 was that they painted this as an essential trait. But I’m also ADHD, and in terms of he-special being specifically about educational needs, ADHD was mine and justified my membership.

Members often posted abstract messages that were not to do with their own life problems, like poems or an essay from America Isobel posted satirising the nature of schools as like slave camps. I carefully followed and never exceeded the practices of other members in commenting on any issues that are abstract and not to do with people’s problems. Like on uniforms: only after one of them posted a poem that referred to skin sensitivity, did I in reply post about myself lodging with the Scottish parliament on these grounds in 2001 an assertion that uniforms are against international law on minority rights. This posting was very popular and started a good exchange of experiences. At the level of personal problems I had relevant things to say about psychiatry and court cases and parents’ difficulties at retaining permission to home educate, and a Scottish education bill then in its early stages. I seemed to be doing fine in the group and felt supported. Best was when Jacqui agreed that I should “keep persisting” in my legal claims to publish. She had shared with the group, that it had only taken her fame to even start overcoming a perception in her wider family that the Jacksons are just attention seekers. This is the unbalanced thing about a web group with one famous member and several other members belonging to the Jessica Kingsley writing establishment: any opportunity that benefitted them, they are civilly obliged to back all the group’s members’ entitlement to have.

Then, just suddenly – I went to my first meeting of a really friendly local organisation that I have belonged to ever since. At that meeting I learned that the Scottish education bill has a good feature of backing children’s own life choices against their parents’ for them, and I reported this information back to he-special. A member, Fiona, was strongly hostile to this, and was of strong view that you must never perceive parents’ choices critically in the home education movement and never approve of the state getting in the way of parents always being in control. This is not a liberal approach to home education, it is one motivated by control of children: hence it does not fit the reason why folk like Isobel are against school. However, both points of view should have been expressible in he-special. Fiona flamed against me in support of her point, by accusing my posts of being hard to understand and needing to be toned down. It is a fact, not an opinion, that my posts can’t possibly have been hard to understand or else they wouldn’t have got the intelligent lucid replies they did. So I replied that I found the accusation offensive and described how the “I don’t understand” trick is often used to silence things that folk don’t want to hear, so its use is a social wrong that must never be allowed to take root.

The moderator, June, came down on me like a ton of bricks for this, treated it as me flaming Fiona while biasedly ignoring how Fiona had treated me, and sided with Fiona’s position. “She thought she was helping you.” Fiona was the one who had broken the rule, “don’t send to others what you find hateful to receive”, so this was now a situation of group bullying. June started making horrible accusations in offlist emails: that I was usually off topic to the group’s purpose and that my answer to Fiona counted as upsetting everyone by accusing them of not caring about my experiences. No one had said any such things before – later, a member who was just leaving and whose perspective was of parenthood opening her eyes about psychiatry, wrote that hecause parents were the majority in the list I had been “the best representative of the voice of the children.”

So I could smell that June was politically hostile and constructing a way to get rid of me, so over the 2 days of this situation I usually replied to her onlist. I combined apologetic peacemaking overtures to the group for upsetting them in any way, with pointing out the injustices in June’s stance and copying for all members to see the unfair things she had written in private. Are spectrumites supposed to get everything right socially, hmmm? Isobel for one remained quite pleasant and posted a sensible answer to me about the members being “not always in tune with each other”, trying to put a closure on the situation and move on. But June on the same day emailed me claiming to have received offlist representations, and to have been in earnest discussion with the other moderators whoever they were (no evidence that they existed), and that she was expelling me.

Within 3 hours of reading this, I had emailed to every member whose email address I knew, 25 of them including Isobel and Jacqui, a notification that I was adding this experience to the content of my slow legal and political struggles over publishing. The he-special members already knew all about this. I referred to the he-special experience in the council tax appeal I was then making and won uncontested. I told the 25, who include Jacqui and Isobel, I held them responsible to leave he-special themselves and disown it or else they would be liably wronging public health, after he-special had emotionally abused an aspie and buyer of the Freaks and Geeks book to whom it had been advertised as supportive. I emailed the 25 a further 4 times with notices of my fightback’s progress, none of which were ever acknowledged. This includes by Isobel whose posting on the day of the explusion had shown she was not in favour of it, and who had been so nice to me at the beginning and legally informative, she used to work for a lawyer, about the impracticalities of fighting bad school experiences by court.

A couple of he-special members pursued a hate vendetta against me into 2 other groups, one claiming I was “booted out” – how hateful is that? – for not being a parent or home educator, when they always knew I’m not a parent and you didn’t have to be and Jacqui was not then a home educator either. Yahoo advised me to give the police a statement about this, and the police have clearly not done anything so I spoke out about that at the Sep 18 meeting of the Scottish parliament’s public Cross Party Group on ASD and the education minister’s reply led to submitting a legal statement on the experience to the education department, as part of his consultation on how to listen to children when taking needs decisions in education. At this moment it became the fault of the 25 how I had testified about them, and so any further cause to email them ended, there was now an irreparable ethical breach with them that can be followed up in the ASD scene’s contacts with government on implementing the Scottish education bill.

While I was doing this, an outstanding nutcase from he-special, called Beryl, had been working herself up into such a frenzy of hate towards me that she started sending a stream of sexually libellous hate mails to an organisation whose website I have some writing on, in which she accused me of having been expelled from twice as many web groups as she had ever in fact known me in, and mentioned nothing of a group I knew her expelled from. By this time I was a diagnosed aspie, while she was calling me a spuriously self-diagnosed one. My contact knew enough about my experience to know exactly where Beryl’s efforts to harrass her were coming from. Beryl openly and recklessly stated, in this illegal hate campaign, that she was doing it on behalf of Luke Jackson and in admiration of him! Obviously he knew nothing of Beryl’s misconduct, but it must be remarked that to admire a teenager by acting like this in his name constitutes maltreatment.

When the Jacksons were on TV in summer 2003, I wrote recorded delivery to BBC viewer and listener correspondence saying the documentary would be unbalanced unless they publicly exposed my experience, as the bad hidden underside of the Jacksons’ publicity machine. I also consider it child exploitation that the BBC ignored this, and I put this too into the parliamentary process so that it is on record that the BBC violated the workings of the Scottish legislative process by this. The documentary told the country Jacqui is mega university qualified in sociology of conflict resolution! The he-special experience, not told to the country, shows this is a joke. She looked the other way while an aspie was backstabbed.

All this shows Luke Jackson was the front face of a ruthless adult publicity machine and the adults who claim to admire him care nothing for the ideas he expressed on social peace, and don’t follow them in practice. They want to continue behaving in ways that are totally against that and abusing his readers. Mind, he has a responsibility to object to this if his social peace ideas are to be genuine. [[ News 8 July 2004: his renouncing of his former opposition to homework, absurdly just because a sister had a good “processing” experience she could have had identically with work done voluntarily, let down all his admirers. This makes the Jackson literature just fickle and not to be relied on, doesn’t it?]]

The education bill was passed by the Scottish parliament on April 1 (I know, but it was) and it includes the policy on consulting children in decisions, that I and my friendly contact wanted and my persecutors in he-special did not want.

Maurice Frank
13 Apr 2004

[[ News- Aug 2, Daily Telegraph, sourced from Parents Against Injustice “The parents of a child with Asperger’s Syndrome fear adoption after being accused of neglecting him by not sending him to school – they say he can’t cope.” Answer that, disgusting wishful thinkers like Beryl – these are the parents in the front line of oppression who he-special let down. What do you expect happens to these kids’ chance to become child authors? ]]

This Yahoo group is advertised in both the books published under Luke Jackson’s name but described in the Times 16 Aug 02 as more his mother’s creations and under heavy adult control really. This should count as a nice thing to say, because it helps show nothing that happened was blamable on LJ, it is the adults around him who at present should be blamed for wanting to continue to advertise GFCF Kids UK. However, in imminent adulthood he too will have a public responsibility to disown it.

Despite its name it is not a children’s group and it covers GFCF diet knowledge for all ages, the name just comes from the diet being targetted at children, as with the original US based group GFCF Kids.

Accordingly, it was entirely in keeping with the way it was advertised, for any adult who has newly learned about AS to join GFCF Kids UK to see if it helped with learning more about the AS scene and whether the diet was personally relevant or not. I don’t have any serious food problems but there is dairy intolerance in my family and a history of angina and strokes. I chose from older childhood onwards that I felt more comfortable eating less dairy than the addictive quantities my family consumed every day: my grandparents were so militant that butter and full cream milk are both nicer than the alternatives, that I caused surprise by not sharing that perception. This family history should show that though I’m not on GFCF diet, learning more about it was relevant to understanding my medical background.

All I ever did in GFCF Kids UK was post 1 message which was a technical enquiry about how offlist email worked. It appeared to me that perfectly decent friendly answers to this were posted. I had never given any personal or medical information to anyone. Then after only a week of membership, I was banned, and never told any reason why.

This was in Jan 2003, before any of the personal trouble with he-special-uk and consequent hate vendetta had ever happened. Behaviour like this is emotional and medical abuse of the public, perpetrated exploitatively through a child figurehead. I know, it’s a secret how, that Jackson participation in GFCF Kids UK has practically stopped entirely since last summer, but advertising of GFCF Kids UK is not being retracted. The library service in Fife was willing to put in writing its sympathies for this being an unjust experience, admitting an ethical question mark over stocking the Jacksons’ books in its autism collection. Sunderland university however has not answered my notice that it and all GFCF diet promoters and parents will be child harmers unless – they automatically disown GFCF Kids UK and all sources that advertise it and all experiential findings on the diet that it has ever made known. Jessica Kingsley and the major book chains have a public health responsibility too. You are judge of whether they are meeting it.

The justification of using such serious words as “child harm” is proved by a tip off I received from a parent, explaining that intolerant behaviour exists in the GFCF scene and may explain GFCF Kids UK’s behaviour as paranoia to keep all its members under doctrinal control. There are fundamentalists of GFCF diet, who rigidly want children taken off both gluten and casein in every case, not to have the effects of removing each protein tested separately as the Sunderland Protocol advises. I had already seen arguments like this conducted on the Allergy Induced Autism website, and been suspicious, considering the full GFCF diet takes away a whopping great range of sources of nutrition. This parent told me she had a soya allergic child who would be undernourished following the full GFCF diet, so as a responsible parent she had reintroduced casein (dairy), and for this she had been screamed at abusively and called a bad parent, by a fanatic who runs an influential GFCF food shop service.

Folk often selfishly don’t think they should have to disown groups themselves in solidarity with just 1 socially wronged member. This case shows that all who take that view are party to empowering fanatics to put at risk children’s access to adequate food.

2015: The NAS’s all day AGM in York on Nov 21. Now awaiting results to the public protest and leafletting of attenders, for the NAS to acknowledge the issue of wronged child authors. Mark Lever’s extraordinary claim to be unaware of the issue makes a shocking picture of how NAS offices have worked, not bringing ordinary spectrumites’ enquiries to their own leaders’ knowledge.

It is good that this action stands alongside the Open Letter to the NAS Trustees, signed by a good list of autistic grassroots. That also puts NAS on the spot very necessarily, for its long deficient pattern of not representing us in what we want to say and not listening to our life concerns. This situation is what the NAS needs and is well overdue to get from the folks who it is supposed to exist for!

This link is an open letter to the NAS, a UK scale action, about its standards towards us: “trying to adapt to what it thinks its audience of the moment may prefer” and “We are concerned that the NAS is a charity that is not listening to the very people – autistic people – it purports to support and address the needs of”. Which has always been my feeling, and why we needed ANS to emerge instead.

As you can see on the link page: NAS reply of Sep 11 is just a businesslike holding acknowledgement, it says nothing of substance.

28 Nov 2015

25 Feb 2016 reply from Jenny Paterson, Scottish section, making some good sounding moves on contributing to the awareness process. Showing a bettter attitude than her predecessor, but next comes seeing whether it will make an effective difference. By admitting her own unawareness of the wronged child authors issue, she has damned her cynical predecessor Robert Moffat, (who disrupted the NAS too the way he jaunted out of his post at no notice) and national NAS until now, for not even making her aware.

2015: Folks wanting to attend the NAS day conference in Aberdeen on March 27, promoting its new comprehensive autism resource and drop-in service there, may have missed getting places by no fault of their own? But booking forms had been circulated without a return address on them, unclear where to return them to with cheques, and a contact phone number in Aberdeen which was not being answered in the hours given, before it sold out.

How was this prevented from happening that this deficient information and contactability has caused anyone to miss out? Including even among the autism scene circles who were sent promotional invitations? This would not be good, and would affect the event’s legitimacy in all conclusions it comes to, if this does turn out to have happened to anyone who tried to book to attend it. So the word needs sharing if it has happened.2016: the above mentioned “new” resource service already closing down!

You heard it here: the NAS was caught here saying it will start being responsive to ordinary aspies – which of course it still isn’t.

Archived story from 2004:
This is a Scottish parliament report on adult services. Scroll to and read the end sentence, which shows the National Autistic Society claiming to embrace the democratic involvement of aspies in improving the nature of our scene. This should be argued to include fulfilling the function of the SF site.

NAS offices and officers don’t even respond in writing or email, to ordinary aspies’ issues and concerns that they cynically want to keep the NAS out of, but they are willing to give their backstabbing answers verbally when they meet you. (The NAS is sponsored by Vodafone, btw)

The Same As You? noted that there are not enough facilities for assessing and diagnosing ASD for older children and adults in smaller local authority areas and in rural areas. The Scottish Executive’s ASD Reference Group, Sub-group Diagnosis recently held a professional study day which, amongst many issues, looked at developing national standards for diagnosis of children and adults.

Services
ASD is wrongly perceived by some to be a childhood condition: ASD is a lifelong condition and children with ASD will grow up to be adults with ASD.

Consequently, thousands of children in Scotland will soon need to access adult services. Currently, appropriate services which meet the needs of adults with ASD is patchy. The forthcoming NAS publication A Place In Society highlights the fact that statutory entitlements available to children and young people with ASD disappear in adulthood, with entitlement to services typically dependent on an individuals presenting needs. There is no equivalent for adults of the raft of current policy initiatives designed to join-up children’s services. The Same As You? said that even when there is a diagnosis, services may not be available as no agency sees it as their responsibility to provide them. A survey found that adults with Asperger Syndrome receive either mental health or learning disability services, but often there is a lack of clarity between these services within social work or between social work and health. Many people on the medium to higher end of the spectrum are often assessed to be ineligible for learning disability services because of their average or above average IQ levels.

Moreover, the recent Scottish Executive review of therapy services found that increased demand for therapy services have come from children with complex health needs and children with autism. Yet, when it came to adults, the review found that there were no adults with ASD and without an accompanying learning disability waiting to access speech and language therapy services in 2002. The review goes on to say that for this group of adults, there are indications that services for the last client group are poorly defined and there are gaps in service provision.

49 % of adults with ASD are still living at home with their parents with 8% living independently; only 6 % of adults are in full-time employment with 4 % in part-time employment; almost a third of adults are not involved in any social activities; only 11 % of carers said that the adult they care for had ever used an independent advocate with 54 % of carers being unaware of an independent advocacy organisation in their area which the person they care for could access.

Types of services
Although current provision is patchy, there are examples of specific services provided by statutory agencies and voluntary organisations across Scotland. For example, the adult autism co-ordinator for Lothian Primary Care Trust, Jane Neil-MacLachlan runs the Regional Autistic Spectrum Disorder Consultancy Service for adults with ASD. This is a multi-disciplinary assessment and diagnostic service for adults in the South East Scotland area.

Voluntary sector organisations provide a variety of services for adults such as residential and day services, outreach services, short break/respite, supported employment, social groups and support groups such as the Scottish Society for Autism (SSA), The National Autistic Society (NAS), Moving Intowork, Edinburgh Lothian Asperger Society (ELAS), Parents of ASD Adults (PASDA), People with High Functioning Autism (PHAD), Strathclyde Autistic Society, Grampian Autistic Society and Fife Action on Autism, amongst many others.

The Scottish Executive recently announced funding of £1.5 million to pilot a one-stop-shop of service provision for adults with ASD in the Greater Glasgow and Lothian area. It is envisaged that the projects will be an access point for adults with ASD and their families to get advice, information and support on diagnosis, health issues, training and employment, and much more. Evaluation of the projects will inform the development of services for adults across Scotland.

Complementing this work, the NAS recently launched a consultation on a proposal for a National Autism Plan for Adults. The aim of the proposal is to create a single UK-wide good practice document for providing services for people with ASD aged 14 and upwards to assist policymakers and practitioners in service planning and provision. The proposal state that the recommendations and outputs should be driven by the views and experiences of adults with ASD who will be involved at every stage of its development. In addition, policy makers, professionals and members of the academic and research community from across the UK should be involved in framing NAPA. The proposed themes NAPA will cover are: contact with statutory services (e.g. health, education, social services), employment/meaningful activity, lifelong learning, relationships, impact on carers, and leisure activities. The consultation closed on 1 May 2004.

Complementing this work, the NAS recently launched a consultation on a proposal for a National Autism Plan for adults. the aim of the proposal is to create a single UK-wide good practice document for providing services for people with ASD aged 14 and upwards to assist policymakers and practitioners in service planning and provision. The proposal states that the recommendations and outputs should be driven by the views and experiences of adults with ASD who will be involved at every stage of its development.